Caleb's been doing great - all boy! Exploring everywhere, playing with everything, pulling his sister's hair!
A couple weeks ago he was diagnosed with Ehler Danlos Syndrome by a genetic doctor that we were referred to who practices at Joe DiMaggio Children's Hospital in Ft. Lauderdale. So what is Ehler Danlos Syndrome? Here's a quote from the EDNF (Ehler Danlos National Foundation) website:
Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue.
Basically it means that we can't throw Caleb around and he'll never be a serious athlete.
In other news, although he's doing great, we are still having big problems with his feeding. He won't eat with a spoon and it's quite an ordeal to try to feed him. He just celebrated fourteen months of life, by the way. We are researching some different programs, at the suggestion of Caleb's GI doctor, that are specialized feeding programs for children. They are all out of state so there's alot of issues to consider.
As always, we appreciate your prayers.
No comments:
Post a Comment